Research reveals significant increase in ME/CFS cases across England

There are almost two -thirds more people who live with me/CFS in England than before, says a study.

The new estimate suggests that around 404,000 people are hit by ME/CFS (Myalgic encephalomyelitis/chronic fatigue syndrome), an increase of 62 percent compared to the previously accepted figure of 250,000.

Researchers also discovered that people from Chinese, Asian/Asian British and black/black British ethnic groups are considerably less likely to get the diagnosis of me/CFS than white British.

Experts say that the findings emphasize that receiving a ME/CFS diagnosis is a “lottery”, depending on ethnicity and location.

Improved training of medical professionals and research into identifying accurate diagnostic tests for the long -term debilitating disease must be given priority, she adds.

The most important function of ME/CFS, called Post-Exertional Malaise, is a delayed dramatic deterioration of the symptoms after minor physical exertion. Other symptoms are pain, brain fog and extreme energy restriction that does not improve without rest. Causes are unknown and there is currently no diagnostic test or healing.

Researchers from the University of Edinburgh used NHS data from more than 62 million people in England to identify those who identify the diagnosis of me/cfs or post-viral fatigue syndrome.

They investigated the data based on gender, age and ethnicity and grouped by different areas of England.

The study showed that lifelong prevalence of ME/CFS for the population of women and men in England can be 0.92 percent and 0.25 percent respectively, or around 404,000 people in general.

The earlier estimate of 250,000 came from the British biobank population that contains disproportionately more people who are in better health.

The prevalence of ME/CFS varied greatly in England, with Cornwall and the islands of Scilly with the highest percentages, while the northwest and the northeast of London reported the lowest.

The condition peaked around the age of 50 for women and a decade later for men, with women who are six times more likely to have it than men in middle age.

Researchers also discovered that the prevalence of ME/CFS varies greatly due to ethnicity. White people are almost five times more likely to be diagnosed than those of other ethnic groups.

This pattern is consistent in all regions and for both women and men. People from Chinese, Asian/Asian British and black/black British backgrounds are considerably less likely to get the diagnosis of me/cfs, with rates from 90 to 65 percent lower than white people. The difference is more pronounced than for other disorders such as dementia or depression, experts say.

The study is published in Medical Journal BMC Public Health. It was funded by the National Institute for Health and Care Research, the Medical Research Council and the Charity Me Research UK.

Professor Chris Ponting, Study Lead of the MRC Human Genetics Unit at the Institute of Genetics and Cancer of the University of Edinburgh, said: “The NHS data shows that getting a diagnosis of ME/CFS in England is a lottery, which you no longer have to make the land.”

People struggle to get the diagnosis of me/cfs. Diagnosis is important because it validates their symptoms and enables them to receive recognition and support. Our results should now lead to improved training of medical professionals and further research into accurate diagnostic tests. “

Gemma Samms, Me Research UK-Financed PhD student